Feel alone

[Eileendonald]

My dad was diagnosed on 17th of Jan he has pancreatic cancer and it's spread to his liver. They told us that it's incurable and when we saw the consultant they said that he was to weak to have chemo and also they didn't like to offer it when it would only add a few weeks onto gge weeks that he has. This week he has really gone downhill. He us looking very yellow looks like he has a suntan lol, he isn't wanting to eat and is finding it hard to get around. He says he isn't in pain although I am controlling it with regular doses of paracetamol and ora morph. His speech is slurred and he is very confused. I know in my heart of hearts he hasn't got long but I feel so alone, when my mum died we were in (name removed - moderator) so had nurses around to tell us what was happening but here at home there is only me and hubby.

Sorry for rambling on and probably not making sense just wondered about others experiences of nearing the end of this horrible disease.

[Veema]

Have you got the palliative care team on board...Macmillan or hospice...district nurses? They'll be able to get things in place for you...you do not need to struggle on your own. I'll write more later as on lunch break now and I don't get long...but someone else will probably respond in the meantime.

[Veema]

Sorry...pressed wrong button.

Feel free to ask any questions at all...many of us have been where you are now.

Sorry you are facing this

Vx

[sandraW]

Hi Eileen, welcome to the forum, I sure you don't want to be here but hopefully we can give you lots of support. I am sorry to hear about your Dad and I totally agree with Veema you should not be alone there is lots of support out there.

Please ring the wonderful nurses on here, they have so much knowledge and are so approachable they will be able to tell you exactly where to go for help, and what to do. you can contact them on 0808 801 0707 they are there until 4 pm today so I hope you see this in time to ring them.

I hope you can get something sorted out soon, take care and let us know how you are doing, sandrax xx

[Didge]

Eileen, when my partner developed jaundice, the palliative care consultant at the hospice unit wanted to do a scan with a view to putting in a stent to relieve the jaundice. My partner turned it down and died a few days later but my point is that there is still often palliative treatment available to relieve symptoms. Ask for whatever help you can. Thinking of you, x

[LanasMum]

Hi Eileen. My Dad was diagnosed at much the same time as you - the ladies on here and the support line have been a fabulous support of information and, more importantly, empathy and understanding. You are not alone. I can't add to the great advice given above, other than to say push hard as hard as you can for referral to a palliative care team and MacMillan. xx

[Eileendonald]

We have district nurse coming to check is sugar levels for diabetes but whenever you mention a concern they just say ring the doctor plus we never get the same one and I feel like I'm explaining hus condition e erytime they come. Macmillan nurse came last week and another one is due now but when I've rang them for advice they are never there and haven't rang me back. I've phoned the helpline from here and spoke to really lovely lady the other day that put my mind at rest that day.

[Veema]

I will say our experience with Macmillan wasn't great, but we don't have Macmillan in the community here, it's covered by the hospice nurses. We had 2 fantastic district nurses and they were really the only people I felt I could depend upon.

Do you have Marie Curie? Aren't they supposed to help with end of life care?

Once you get going with palliative care, you will be able to get medical equipment at home, such as a bed and anything else he needs. Has he expressed a wish to stay at home, or would he prefer to be in a hospice?

Vx

[Eileendonald]

Macmillan nurse came this afternoon and she was really lovely. She spoke to dad about how he felt and he spoke quite openly with her which is unusual for dad. She explain about his speech and his swelling in fact everything. She also broached the subject of the DNR which is now gonna be put in place. She also order a kit for injectable medicines as he is finding it hard to swallow. Feel a bit better even tho I know he is approaching the end. Thank you everyone for your kind words.xx

[Elaine123]

Glad that at last you got a nurse who realised you and your Dads need for support and took time to spend talking with your Dad at this very important time. I know what you mean by feeling alone I was the same until I found this forum and the wonderful people and nurses who have come to my aid with support and advice. Hope your Dad has a good weekend....

Elaine

X

[Veema]

I was going to ask you about the DNAR and crisis meds.

Huge hugs Eileen...it's a horrible time...keep posting, we're here for you. The main thing now is he's kept comfortable and pain free.

Lots of love and strength

Vx

[Proud Wife]

Hello Eileen

You will never, ever be alone here. I am so sorry that you too have been affected by this vile disease. Sounds like you've finally got the support you so desperately need for your dad.

I'd be lost without my forum family here xx

[Guest]

Hello Eileen,

I nursed my husband at home so know what it is like for you. I created a thread on here called "Our Journey Without Chemo", it may help you to know what may happen, although every case is different, especially time scales and some ideas about what to do if they have pain or other symptoms. You may find a baby monitor helps at night or when you are not in the room. I had one I could carry about. If Dad struggles to swallow or drink, crushed ice cubes plain or flavoured can be comforting. We smashed them up and spooned them to him.

The Treatment Escalation Plan is not only about resuscitation but about how your Dad wants to be treated. My husband wanted to die at home but also wanted to be kept comfortable. The drugs the Macmillan nurse is ordering from your GP are for a syringe driver which allows medicine to be given continuously over 24 hours so you don't have the issues of drug "wearing off". They can also be topped up by additional injections if required by your community nurses. Your GP is the person ultimately responsible for your Dad's care and all prescriptions will be signed be him or her. You should definitely call the GP if you have an issue and I would suggest you go and have a chat with them about how they will manage this process and what additional help you can get, e.g people to sit with Dad so you can rest etc. Macmillan should organise attendance allowance so you can have some help with caring for Dad if you need it. The community nurses will also organise any equipment you may need such as a commode if he becomes too weak to get to the loo.

It is not unusual for patients to speak to the nurses or the doctor, they don't want you to be more upset than you are already and sometimes don't want to tell you their fears. I always made sure my husband had private time with his nurse and his priest. We asked the priest to visit, whatever your views they have the experience and skill to say and do the right things, it's their job… people who have not been religious sometimes feel comforted to have some brief prayers, "just in case".

Don't forget yourselves in all this, you are not super human so don't try too hard, you will have lots of time on your hands later on so don't worry about letting things go. Send the washing to a laundry and eat ready meals for a bit. Do the shopping on line and anything else that makes life easy. If you can, try and have a walk or some exercise, a bit of fresh air can help a lot.

I send you all love and hope that you have a peaceful and restful night.

Marmalade xxx

[Eileendonald]

Thanks marmalade have just read your blog and it is so similar to dad's journey. Thank you for writing it as it's made me feel better.

We had a restless night last night with dad eventually going to bed (he slept in the front room chair) at 5.30am and didn't get up til 9.30am. That was scary opening his door as he us normally an early bird. He has had a banana and taken his painkillers but couldn't manage any others but the macmillan nurse said not to worry as long as he manages his pain relief. He us now snoozing again in the chair.